The Real ME: A Stock Photography Resource for the Media

Sasha announces a new resource of appropriate photos for ME/CFS media stories ...

No! Not this beautifully groomed woman
with a mildly troublesome sore throat!​

We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.

But do pictures that illustrate ME/CFS by showing office workers suggest that this level of function is as bad as this condition gets?

For years, patients have been up in arms about this issue, and #MEAction recently started a great campaign for patients to contribute their own photos to the cause.

However, coming up with photos isn’t easy, and it will take a long time to build a suitable pool.

But why is it so hard?

It all has to do with how the media tells stories. Let’s take a look at two health articles in the same UK national newspaper — the Daily Mail.

The first story is about a particular little boy, and all the photos of him have a real-world look which is due to their imperfect, cluttered settings and the not-great lighting and his natural expressions and poses.

The second is a story about a health issue affecting women in general, not a specific person. Note the beautiful women, flawless make-up, elegant clothes, lovely hair — sound familiar? — but also the production values: perfect composition, professional lighting, the total lack of background clutter.

It all says, ‘this is a photographic model in a staged setting, not a person who genuinely has this health problem.’ And it’s an absolutely standard approach by the media to general articles about health issues.

Yes! He’s lying in bed, he’s not in office clothes
and he looks exhausted. That’s more like it!​

Unless an ME/CFS article is about a specific patient, that’s the kind of photo we’re going to need to provide: a professionally photographed, high-production-values shot that shows someone who is clearly a model, but who is giving an accurate portrayal of the disease.

That’s the only kind of photo that a media outlet is likely to use: and they’ll want it to be in stock photography libraries because they already subscribe to them and are confident about the licensing arrangements.

Our problem is that when a picture-desk editor types ‘chronic fatigue syndrome’ or ‘fatigue’ into a stock-photo searchbox, it produces the yawning office guys and the headache women.

So until someone produces some professional custom-shots or sorts those stock-library tags out, Phoenix Rising has produced a resource of links to suitable photographs from major picture agencies iStock and Shutterstock.

I hope that our charities who deal with the media will make journalists aware of it, and that they’ll alert their picture desks.

The days of yawning guy are surely numbered.

But meanwhile, have your say.

What do you think of the pictures we're suggesting? Can you suggest any additional ones in a professional stock library that would be appropriate?

I think we've just got to be aware that that kind of thing isn't going to end up illustrating a general news article about ME/CFS in the mainstream media. But it's the sort of thing that charities can use.

I'm thinking more regular magazines, I don't read science mags but see images like this or the one Simon posted often enough. Maybe The Atlantic or The New Yorker off the top of my head? More in depth articles. But I see your point that the mass media and their standard use of photos is most important,

Not that this isn't complicated enough but I thought I'd bring up the fact that for so many the brain disfunction is worse than the "fatigue". Funny, I actually miss real fatuige as I remember it. It was a pleasant feeling at times and I haven't felt it since I got "Chronic Fatigue".

A lot of people say that. I agree. I walked around wired and anxious for months until I took supplements for the serotonin and gaba neurotransmitters and was happy to have fatigue again, lol. How would you show the brain issues, wow--if you thought showing fatigue was hard...back to holding the head and grimacing. I really like the Alzheimer's tree losing it's leaves, though.

A lot of people say that. I agree. I walked around wired and anxious for months until I took supplements for the serotonin and gaba neurotransmitters and was happy to have fatigue again, lol. How would you show the brain issues, wow--if you thought showing fatigue was hard...back to holding the head and grimacing. I really like the Alzheimer's tree losing it's leaves, though.

I don't think it's possible to show a whole ton of issues in a single photo/illustration and anyway, it's not the job of a photo to carry the whole weight of getting across what the disease is. I don't think we should worry too much about perfection - just getting away from the sleepy office workers and to people in wheelchairs or in bed would get us in line with MS, for instance, and would be much more appropriate and consciousness-raising.

The newsroom image library is home to the images journalists request most often. These high-resolution, public domain images are ready to print in your publication.

For images not available in this library, visit the Public Health Image Library (PHIL) We also recommend the National Library of Medicine image library....

The Public Health Image Library (PHIL) offers an organized, universal electronic gateway to CDC’s pictures. We welcome public health professionals, the media, laboratory scientists, educators, students, and the worldwide public to use this material for reference, teaching, presentation, and public health messages. The content is organized into hierarchical categories of people, places, and science, and is presented as single images, image sets, and multimedia files.

EDIT: And with the idea of what ME looks like... I'm on the verge of "passed done" today, and am overall experiencing a relapse, meaning I get hit harder sooner longer. And when I get "hit", it's written all over my face. And so I've long wondered if facial muscles/expressions could be used as any sort of measurement tool for people with ME to, for example, provide info for level of severity. I look "drained" if I walk too long, if I talk too much, if I read too much, etc. The look eventually appears in response to "physcial" or "cognitive" exertion.

With the conclusion (in part): "Knowing the amount of facial muscle fatigue of individuals without impairment can be beneficial in developing outcome measures and goals for rehabilitation of individuals with facial neuromuscular dysfunction. Changes in fatigue tests of an individual with facial neuromuscular dysfunction with rehabilitation is reviewed for comparison."

Why can't people with ME's facial muscle fatigue be measured before/after tasks? And over longer periods (weeks/months) too to collect info of individuals' peaks/valleys? Is this data we could measure/collect ourselves?

Sorry, Sasha if this is too off topic! (I'm currently too pooped to post elsewhere, but can eventually! )

And with the idea of what ME looks like . . . . when I get "hit", it's written all over my face. I look "drained" if I walk too long, if I talk too much, if I read too much, etc. The look eventually appears in response to "physcial" or "cognitive" exertion.

@Asa Like you, overdoing it is "written all over my face". Last evening was a perfect example. I watched Dr. Bell's video (almost an hour), and did one PR post -- both while lying in bed. Afterwards, my husband commented on my appearance. My face was red and puffy, my eyelids swollen, with the right eyelid drooping almost shut. The left more-open eye was red, glassy and watery. I'd be embarrassed to have anyone in the outside world see me looking that bad.

I prefer the pictures that show severe sufferers because they need help urgently and to show pictures of more mild sufferers doesn't show the urgency of the situation of the severe. Until we have some answers with biomarkers we need to put the severe first. I don't know what others think. I am moderate but have severe bouts. So I want the message out there strongly representing the severe sufferers mostly for now.

I too think they need to start focusing on portraying severe sufferers in photography. When you see cancer articles you generally see a person who looks like someone with cancer with the pictureusually bald or with hair growing back (even if with most cancer sufferers you cant tell to look at them).

Professional models trying to look like ME patients, just wouldn't pass the look. I found when I was in studies at the hospital, I could always tell just by looking at them who was one of the matched control group people and who was the real ME/CFS person just by looking at their eyes, the wane look of their face etc etc.. they didn't like sleepy tired but often looked like the very life had gone out of them. You cant get a model to portray this.

I think there should be a "real" stock of ME/CFS photos which media have permission to use or have been put together to represent this illness eg a huge box of of a ME patients medication and supplements to represent our search to try to get our health better..

I have a photo of me somewhere, all dolled up, I think I had make up on and I'd done my hair bright colours for a happy occasion but I still carried the ME eyes... the photo a contrast of happiness but hauntedness..

Professional models trying to look like ME patients, just wouldn't pass the look. I found when I was in studies at the hospital, I could always tell just by looking at them who was one of the matched control group people and who was the real ME/CFS person just by looking at their eyes, the wane look of their face etc etc.. they didn't like sleepy tired but often looked like the very life had gone out of them. You cant get a model to portray this..

If not models, what about actors? I'm near convinced that Christian Bale can morph into anyone in any condition. Perhaps local acting communities could be approached, with background info (including stigma info), and asked/challenged to present the look?

This is a great topic and article! I do find it ironic however that when it shows up in the banner area of a page, it features Glamourous Sore Throat Lady
I wonder if there's a way to change that to Truly Exhausted Man, in the spirit of showing what a difference it makes to immediately see the reality of this illness illustrated so plainly.

With a tree, there's not so much to judge. Maybe an idea comes through better? Is more universal? It seems that if/when there's a "human" portrayed, then all the human social baggage has the potential to be evoked.

I prefer the pictures that show severe sufferers because they need help urgently and to show pictures of more mild sufferers doesn't show the urgency of the situation of the severe. Until we have some answers with biomarkers we need to put the severe first. I don't know what others think. I am moderate but have severe bouts. So I want the message out there strongly representing the severe sufferers mostly for now.

I so agree. When you hear 'lupus' you think, ok, there's a possibility of severity and death. People need to see that this disease can be severe and often is so that 'severity' will come to mind when they think of it.

Great thread. I too have been getting really annoyed with those perfume and make up models having their pathetic little twinges. I've thought a bit about this and I think the problem is more far reaching in its consequences than it appears. Firstly, you have to see that pictures are important to telling a story. That's why publishers always want them, even if they are just stock. A picture is always evocative. Humans are attracted to faces. They makes us uninterested or involved.

We need to change the acceptance criteria for how we are portrayed, cause publishers to take more responsibility for their pics because they are an authority, a knowledge source. A stock photo of worshippers at a mosque is not an appropriate insertion for an article about a terrorist organisation and that is because of the links that it suggests and even creates. These forehead-pinching, soft-filtered models don't look believable. If they don't look believable, then they look fake, at best they look like their complaint could be fixed with an aspirin, a lie down or a coffee, but they aren't in an article for those things, they are in an article about something purported to be serious... therefore they look psychosomatic. If the publishers are pressed for time etc, and just want to get any old pic under the 'fatigue' search in there, that's not good enough. In the minds of readers, this is a picture or 'face' portraying the illness... And it really doesn't look like we should be encouraging this girl's fears. I mean she might start believing she's really sick! This does no good for the public image at all. Clinical photos are also unuseful. They can appear alienating in a subordinate way, even ghoulish. We don't want to be trivialised or objectified.

It is laziness, lack of care, lack of engagement in the subject by both the photographer and the publisher. It's the positive lighting, crispness and colour as much as it is the model that makes it fake. The waif example, there, we know she's not not a real street kid, but we fall under the illusion because of all the right posing, the model's 'look' and background setting. She is all in dirty white and taupe, they have utilised shadow and taken shots at angles that parody comic book defiant victim pathos. We are aware of her awkward, at odds body not just her face so there is a sense of alienation going on as well. Dior's waif set were explosive on the fashion photography scene. They advanced the genre like nothing else. But they were models for something else. I wonder how well he could do sick folk if the focus was on clothes. Benetton managed to get childbirth onto a billboard advertising their great 'united colours'.

There is a couple in Aus who take pics of road kill and they get more dignity in a squashed lizard than anything I've ever seen in ezine articles. People need to be be portrayed with that same kind of focus, creativity and passion. With this approach it wouldn't matter how severe the disease is. A pic of an office worker at the coffee trolley in any state of illness, mild or severe, with the teammates already at the table laughing and enjoying life for instance, would portray a lot. (Thinking about it, it would work as reminder stills for a you tube or tv ad.)

We need to push dignity over ease of grabbing a stock pic. We need to stress that the current stock portrayals are inappropriate representations. We need a 'face' - a new dispensation in photography that tells how it is and what it looks like to live with ME/CFS or any other chronic, poorly respected illness. What's lacking is engagement and compassion.

Back to reality tho, even if they just greyed out the cheap and nasty 'oaaahhh, dere's a fwy in my stwawbewwy sundae' shot it would portray more gravity. Something... Anything!! Mr Dior... Any ideas?

I so agree. When you hear 'lupus' you think, ok, there's a possibility of severity and death. People need to see that this disease can be severe and often is so that 'severity' will come to mind when they think of it.

Yes, exactly. We need to present the severe reality of what ME can do. Show the world just how terrible this illness is. You don't see the severe when ME is at it's worst. In my severe years I would hold off going to the doctor until there was a bit of easing and even then as soon as I had arrived at the doctors I would ask the reception if they could put me in an examination room so that I could lie down. I could not hold myself up in a chair for long.

I am fortunate that I don't need an appointment at my doctors, I can just turn up and that has been perfect for me with an illness like this. It would have been hard trying to make an appointment and keeping it in those years.